Helen Ellis, self-advocate, tells Parliamentarians why health system is a ‘Spectrum of Obstacles’ for autistic people

helen speaking.pngGood afternoon; It’s lovely to see so many people here today to listen to what our Commission has to say – for a very long time now we as a community have felt ignored or pushed aside so to see people from outside the Autism world here wanting to affect positive change is truly heart-warming.

I stand before you today not as a representative of the Autism community, but as an individual, as someone who has struggled both pre and post diagnosis.

You may look at me and not see someone who needs help; you may only see the mask I wear, the person I want you to see. I stand here as a confident independent woman, someone who lives alone, works full-time and splits my free time between the commitments of being a Tizard Centre postgraduate, a speaker for the NAS and Research Autism and whenever possible following my beloved Saracens round the country making friends with both fellow and opposition fans wherever I go!
What you see on the surface however is not the whole story, while some of you may be able to see the stress I carry or the tiredness in my eyes, most people would dismiss it as work related or assume I had a young child at home! And while a not small amount of my stress is from work, there is a lot that is due to the way my autism affects my life.

Some of you may be able to see the strain I’m under trying to control my anxiety, you may be able to tell the level of pain I’m experiencing from my sensory sensitivities, or recognise the amount of effort I’m putting in to maintaining this ‘normal’ image.

But can you know what this will cost me later? The hard recovery process I will have to go through just to be able to function at work tomorrow?

The term ‘Autism Fatigue’ is relatively new but very apt. There are times I simply cannot explain what is wrong with me as I am so overwhelmed, so drained of energy from just keeping going that formulating thoughts into speech becomes near impossible. As a result I can come out of a doctor’s appointment that was for an earache with a prescription for antidepressants – again.

Of course, that outcome is subject to me actually making it into the consultant room in the first place – there have been a number of occasions in the past where I have simply walked out abandoning appointments or tests because the waiting room has become too much and my sensory sensitivities have been driven into overload by the potent mix of chemical cleaning smells, screaming children, airless rooms and over busy walls. When you’re not feeling well and already anxious about talking to someone do you really need to be overwhelmed with images of the many ways you could die?!

I like to think that I’m a fairly effective communicator, able to get my point across and be understood, so when I’m finding it hard to get what I need out of my GPs surgery it’s really not a surprise to me to learn of some of the horror stories that the commission heard. Some of the experiences sent in as evidence were terrifying – one woman told us of her 40 year old autistic daughter who was taken to hospital with a suspected dislocated hip only to discover that it was in fact a 2 kilogram cancerous tumour! Another parent told us of their autistic son only being diagnosed as having acute renal failure after having an NHS health check – for which he is only eligible for because he has learning difficulties.

But not everyone with Autism has learning difficulties.

A regular health check for autistic people would go a long way towards helping the current situation and catching these medical issues before they become life-threatening and more costly to the NHS as well as taking some of the pressure off of carers, parents and the autistic people themselves.
I know I would definitely appreciate an annual health check if only to put any niggling fears at ease and enable me to regularly stay in touch with my GP surgery. I do know from personal experience with my university mentor however that the onus needs to be on the professional involved – I needed my mentor to regularly contact me to see how I was doing, if it was left for me to contact her when I needed I would bury my head in the sand and not know how to deal with the problem, often leaving issues far too long to ask for help with.

And that ultimately is the crux of this issue, why this report was needed. I can’t speak for all autistic people but I can say that the majority of us struggle to ask for help when we need it and struggle even more to cope when we don’t get it.

We’re not asking for the world to change overnight, for every person in every healthcare establishment to suddenly become an expert in autism, we’re asking for the people who hold the purse strings to recognise that we , the autistic community, are a large (larger than you may think!) group of patients (and voters!) who need more support than is currently being provided.

We need to feel safe going into surgeries and hospitals; we need to know we’re not going to be belittled by receptionist who doesn’t understand our difficulties; that we’re not going to be dismissed by GPs who aren’t able to hear what we’re trying to communicate. We need to feel confident that we’re not going to get trapped on the mental health roundabout being passed pillar to post; only receiving crisis support when we have a complete breakdown.

We’re not asking for UNreasonable adjustments or a complete restructure of the NHS. To paraphrase a favourite film quote of mine “we’re just a community of people, standing in front of our representatives, asking them to help us”

Please, it’s taken so much effort from us just to get to this point, to finally be able to express what we need and ask for the help to get it. Please don’t let us down.


Thank you.

Westminster autism inquiry releases findings…

Our Inquiry Report ‘A Spectrum of Obstacles’ Available – CLICK HERE!

Following a seven-month inquiry and a consultation of over 900 people, the Westminster Commission on Autism launches its inquiry report and calls for improved access to healthcare for all autistic people.

Easy Read Summary with Pictures – CLICK HERE!

If you want to send feedback on the report or SIGN UP for updates – CLICK HERE!A SPECTRUM OF OBSTACLES

 

 

Input to the Westminster Commission on Autism

WRITTEN SUBMISSIONS ARE NOW CLOSED BUT YOU CAN INPUT VIA OUR SURVEY!

https://www.surveymonkey.co.uk/r/WestminsterAutismCommmissionSM

The Westminster Commission on Autism is conducting an inquiry into access to quality healthcare for people on the autism spectrum and we need your input.  This report will make recommendations to the Government to improve healthcare for people with autism.  Please tell us what would help you and your family!

  • Are you on the autism spectrum?
  • Are you a health professional?
  • Are you a parent/carer for someone on the autism spectrum?
  • Do you represent a charity or third sector organisation who work with people on the autism spectrum?
  • Are you a professional in the field of autism?
  • Are you an academic in the field of autism?

If so, PLEASE send a written submission to the Westminster Commission on Autism.  We need to hear from those who have stories, opinions, suggestions and ideas to help improve access to healthcare for people on the autism spectrum.  If you are a parent/carer for someone who would be unable to contribute to the commission using the Easy Read form, please advocate appropriately for them in your submission.  You must be a citizen of the United Kingdom make a submission.

Please use this form to help structure your submission.

There is an Easy Read version available here.

Alternatively, there are a limited number of 20 minute telephone appointments available. Please phone 0300 800 8801 if you would prefer to contribute to the inquiry in this way.

The closing date for submissions is Monday 2nd May 2016.

If you would like to know more information about the commission please see the following:

The Westminster Commission on Autism needs YOU!

New Westminster Autism Group

Universal Healthcare? What if you have autism?

Why a Commission? & other FAQs

 

 

Universal Healthcare? What if you have autism?

The Westminster Commission on Autism met for the second time on 2nd February 2016 in order to scope the inquiry on healthcare.

A recent study conducted in Sweden shows that people with autism are more than twice as likely to die prematurely in almost all ’cause-of-death categories’.  This means that people with autism who have cancer will die quicker than others with cancer.  This is the same for almost everything from epilepsy to heart disease.

Why are people with autism dying prematurely?

Well we need to find out.  One tragic reason is that the leading cause of premature death for those with so-called ‘high-functioning’ autism is suicide.  But autism is not a mental health condition nor should it inevitable co-occur with mental health issues.  Other reasons for this increased risk of premature death may include poor access to healthcare or inappropriate healthcare.

Our autistic commission members talked about avoiding healthcare environments.  Healthcare in the UK should be universally accessible.  No one should find accessing healthcare so stressful that they avoid it entirely.  Reasons for avoidance included difficulty using appointment booking systems, misunderstanding among staff including receptionists, fear of being dismissed/talked down to, harmful sensory experiences in waiting rooms and a lack of faith that the doctor will do anything for them.

There is much that needs to change.

‘Reasonable adjustments’ ought to be standard practice, GPs ought to be well-trained to consult appropriately with someone on the spectrum and people with autism should feel empowered and equipped to access all of the healthcare they need.

The commission members including the Parliamentarians are very concerned; not only are people with autism struggling to access quality healthcare but worse, they are dying prematurely – possibly as a result of poor access.

So what now?

Our inquiry will consider the following:

  1. The barriers people with autism face when accessing healthcare
  2. The role of training for health professionals to overcome these barriers
  3. Ways of empowering and equipping individuals to access the healthcare they need
  4. The role of data collection, inspection and regulation in improving quality of life and life expectancy for people with autism
  5. How to better implement existing resources/guidelines/reasonable adjustments
  6. Whether there is a need for new resources to help overcome the barriers and improve quality of life and life expectancy

Our Commission intends to produce policy and practice recommendations to see genuine action taken to change this.  Quality healthcare is not available to all and this is a gross inequality; disadvantaging people with autism.

If you are autistic or are a parent/carer for someone with autism please get in touch with emily.christou@nccuk.org.uk

New Westminster Autism Group

The Westminster Commission on Autism is a new group.

The group is made up of:

  • Members of Parliament
  • Autistic people
  • Parents
  • Doctors
  • Charities
  • And more…

The first topic is health.

Good healthcare is very important for all people.  Sometimes people with autism do not get the healthcare that they need.

The group will write about healthcare and autism.  Then they will ask for changes to be made.

If you want to tell the group your ideas about healthcare you can email emily.christou@nccuk.org.uk.

 

Why a Commission? & other FAQs

The Westminster Commission on Autism seeks to be as open, transparent and accessible as possible. As such, we welcome your questions, comments and feedback.  Here are the answers to some of the most frequently asked questions.

 

“Why a Commission on Autism?”

A commission is a tried and tested model for influencing change.  It is an opportunity to draw a group of key people together with parliamentarians to hold inquiries, hold evidence sessions, call for written evidence, write reports and produce recommendations for policy and practice.  These inquiries will be time limited.  The first inquiry will be on access to healthcare for people with autism.  This inquiry is currently in the scoping stage.  

Critically, a commission creates an opportunity to ensure that autistic individuals, charities, service providers, policy-makers, academics and health professionals can collaborate and work strategically in partnership with one another to see the world become a more autism friendly place!

 

“What’s the difference between a commission and an all-party parliamentary group on autism (APPGA)?”

‘An APPG is an informal group of Members (of Parliament or the Lords) who join together to pursue a particular topic or interest. It is essentially run by and for Members of the Commons and Lords, although many groups involve individuals and organisations from outside Parliament in their administration and activities.’

The all-party parliamentary group on autism is an active, well-established group with 200 parliamentarians as members.  Membership is limited to parliamentarians alone.  The group is uniquely placed to campaign for greater awareness of autism in parliament, lobby government for improved services and provide a useful platform for issues around autism to be debated and discussed.  The National Autistic Society provides the secretariat to the APPGA.  Cheryl Gillan MP is the Chair and the group is supported by an Advisory Group which is chaired by Dr Juli Crocombe. 

In contrast, the commission has a mixed membership from across the autism community who will select specific inquiry topics, run time-limited inquiries, write reports and make recommendations.  The commission is focused on seeing policy and practice change and this is why its Westminster focus is strategically important. 

 

“What is the relationship between the Westminster Commission and the APPGA?” 

The Chair of the APPGA (Cheryl Gillan MP) is a member of the commission and this vital relationship ensures that work is not replicated.  The National Autistic Society, who provide the secretariat to the APPGA are also represented on the commission.  The groups have their own mandates but both seek to see the world become a more autism friendly place!

 

“Who are the members of the commission?”

Alongside self-advocates and parent-advocates, the members of the Commission include Barry Sheerman MP, Cheryl Gillan MP (Chair of the All Party Parliamentary Group on Autism), Steve McCabe MP, Tim Loughton MP, Baroness Uddin.

In addition, the membership includes representatives  from Ambitious About Autism, Autism Alliance, Autism Plus, Autism Research Centre, Autism West Midlands, Autistica, Centre for Research in Autism and Education, Hesley Group, Hidden Impairment National Group, King’s College London, London South Bank University, National Autism Project, National Autistic Society, National Children’s Centre, NHS Confederation Mental Health Network, North East Autism Society, Research Autism, The Giving Tree Foundation, and the Royal College of GPs.

“Can I get involved?”

Yes please do!  It is vital that every activity of the commission is guided and ratified by those who are autistic or are parents who are advocating for autistic individuals who cannot do so themselves.  We are delighted to have self-advocates and parent-advocates on our membership.  We will also be making use of focus groups, round table discussion groups and interviews/surveys.  Please share your ideas/experiences/expertise with us.  

 

 

“Is this your website?”

No. Our website is currently under construction.

 

“How can I get in touch?”

Please get in touch with our National Strategy Coordinator, Emily Christou at emily.christou@nccuk.org.uk

 

“Who is funding this commission?”

The commission is being funded by an independent charity with no previous involvement in the autism sector.  This helps to ensure that the commission is not under bias from one interest group within the autism community.  The commission seeks to find the points of consensus among the different interest groups and advocate for all people with autism.  

The independent charity is the National Children’s Centre and the new group running this commission is the National Children’s Group.  Please note this commission is concerned with autism across the ages and has no bias towards children.  

We are seeking further financial support to give the commission a financially sustainable future and would welcome enquiries from supporters/sponsors.

The Westminster Commission on Autism needs YOU!

The Westminster Commission on Autism is a new group made up of parliamentarians, autistic individuals, parent advocates, health professionals, charities and service providers etc.  The group was set up in recognition of the fact that there is always more to be done to make the world a more autism-friendly place.  The commission will hold inquiries, write reports and make recommendations for policy and practice.

On the 1st December 2015, the core group met and discussed areas for inquiry.  A range of topics were considered including diagnosis, employment, family support and mental health.  It was felt that a strong first inquiry topic would be access to healthcare. 

It is critically important that the commission is informed, guided and verified by autistic people and while a number of members are either autistic or parents, we want to reach out to many more than this. 

We are looking to achieve this via two avenues – firstly we want to look back at research/surveys/consultations that have already been carried out – in many cases people with autism and their families have spoken up already about their needs but there is more to be done to implement the changes and ideas suggested. 

If you know of any research/surveys/focus groups etc that have considered the priorities of those on the spectrum, their needs and suggestions, please get in touch.  The commission is keen to draw on existing work and not waste resources by replicating studies that have already been conducted.  Many people in the autism community feel they have reported their concerns and suggestions time and time again but nothing ever changes.

Secondly we will want to hear fresh ideas and experiences from autistic people and parents/carers to inform the priorities of the commission and the recommendations it will make.  If you would like to be involved in facilitating this in any way or contributing your experiences, stories and ideas please get in touch!

We hope you agree that this is an exciting and unique opportunity and we look forward to working together to make the world a more autism friendly place!

If you would like to hear more or get involved please contact emily.christou@nccuk.org.uk